Wednesday, January 15, 2014

A time to twirl

For many kids with RS, spinning is a part of their life. They spin when they stand still. They spin as they walk. They spin when they sit on the floor. Like a tiny little top. Abby is one of those children. The girl needs to spin in order to regulate her body (at least that's how I understand her explanations). I don't mind her spinning but we do try to keep it to a minimum at school so she doesn't distract others.

We have tried MANY therapies and strategies to get the spinning under control but have had little success. While I wish this post was written to outline a strategy that worked, it isn't. :D Instead I am happy to say we found a place where she can spin and whirl and turn and twirl until her little heart (and brains) content.

She is the twirliest, most accomplished spinner in the entire ballet class!

About Abby

Abby was born with a rare malformation of her cerebellum known as rhombencephalosynapsis. This means that her cerebellum is completely fused at the midline.

She also has structural malformations in her frontal lobe, partial agenesis of the corpus callosum, enlarged 3rd and 4th ventricles, hydrocephalus and a mild chiari malformation.

Very little is known about her condition but what we do know is she is pushing past every limit that has ever been placed on her. Life with RS is not easy but Abby makes it look effortless. She is a tale of success and overcoming obstacles. I live in awe of her every single day.

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About Me

I married my high school sweetheart and our life has been full of ups and downs. After years of infertility and loss I was lucky enough to become the mother of twin girls and a sweet little boy. Despite dealing with a rare diagnosis, ADHD, anxiety and our fair share of kid drama we wouldn't trade it for anything.